Judge rules 15-year-old lacks sufficient maturity to decide on life-saving treatment

Key messages from the case

Children under 18 (under 16 in South Australia) may be able to decide about their own medical treatment if they are mature enough to understand fully the proposed treatment and its long-term implications. This is known as ‘Gillick competence’. Determining capacity requires assessing a child’s emotional and intellectual maturity. Even where children understand the proposed treatment, they may lack the emotional ability to evaluate it rationally and weigh both long-term and short-term implications.

Courts have the power (called the parens patriae jurisdiction) to make orders for a child’s care and protection where it decides those orders are in the child’s best interests. The power is exercised cautiously and in exceptional circumstances. For doctors, the need to approach the court for orders like this will usually only arise in hospital settings.

Details of the decision

JJ was aged 15 years and 5 months at the time of the decision. They were in remission after treatment for B-cell acute lymphoblastic leukaemia (ALL). However, JJ had developed a therapy-related myeloid neoplasm (t-MN) during her treatment. The treating team recommended a haematopoietic stem cell transplant. Bone marrow donor matches were identified, including JJ’s sibling.

JJ’s mother and JJ refused treatment. JJ’s father consented, but he was estranged from JJ and had not been involved in their care for 8 years.

The hospital approached the court for:

• a determination of whether JJ was competent to refuse treatment;
• if not, an order authorising treatment in the best interests of the child.

Gillick competence

On the evidence, JJ was angry and frustrated with the treating team, did not trust their advice and felt there was no respect for JJ’s autonomy. As an example, JJ reported having been held down while a line had been forcibly and painfully pulled out of their chest.

JJ had experienced side effects from medication, including seizures. They felt the treatments had always been worse than the disease. JJ was tired of treatment and did not want to miss upcoming events such as a school production.

JJ was also angry the treating team had contacted their estranged father.

Both JJ’s treating doctor and an expert child and adolescent psychiatrist examined JJ and provided opinions that JJ did not have capacity to make the decision.

The psychiatrist concluded JJ was intelligent, understood the facts of the treatment and knew they needed the treatment. However, the expert stated that JJ could not set aside their frustration and anger at the treating team and wished to make things as difficult as possible for them. This was impeding JJ’s capacity to evaluate the competing short-term and long-term goals rationally.

Best interests of the child

Extensive and independent medical advice concurred that:

• the proposed transplant was the only known curative treatment for JJ’s condition, and
• without treatment, JJ’s cancer was expected to return and become progressively more resistant to treatment.

JJ’s treating paediatric oncologist estimated that without the transplant, JJ’s likelihood of long-term survival was no better than 5%. Transplant treatment offered them a 10-year survival rate of approximately two in three.

However, treatment could be painful and involved potentially severe side-effects including graft-versus-host disease, infertility and other organ damage. It would involve a considerable stay in hospital and isolation due to compromised immunity.

JJ’s mother refused to consent to the treatment as she believed God had cured JJ and they did not require any further treatment from the hospital. JJ’s mother was concerned about the risks as well as the potential social and emotional effects of the treatment. She did not want to be responsible for the decision as she believed there would be spiritual consequences if anything happened to JJ resulting from the treatment.

Given JJ’s father had not been active in their life for some time and provided no financial support, the court gave minimal weight to his position.   

Outcome

The judge concluded on the evidence that JJ lacked sufficient capacity to make the decision, partly influenced by their anger which impeded the ability to properly evaluate the clear advice to undergo life-saving treatment.

After balancing JJ’s prognosis and the risks of treatment, against the short-term consequences, the judge concluded the recommended transplant gave JJ the best chance of leading a full life and concluded it should be provided as a matter of urgency.

The judge also made orders allowing he hospital to make applications for further orders if necessary to facilitate fertility preservation treatment or if tests showed JJ was no longer in remission.

The judge also recommended steps be taken to attempt to restore the therapeutic relationship with JJ prior to commencing treatment, for example through discussion between JJ and the treating team facilitated by the psychiatrist.

Key lessons

When assessing whether a child has capacity, determining ‘maturity’ includes both intellectual and emotional maturity and the child’s ability to weigh up the medical evidence objectively and consider both short-term and long-term implications.

There is no fixed age when this occurs and is based on clinical judgement.

In complex cases, where you have concerns about a child’s capacity, you may need to approach the court for orders. The court must make its decision in the best interests of the child’s welfare, including weighing medical, spiritual, personal autonomy and identity considerations.

The nature of the therapeutic relationship, or the child’s perceptions of it, may influence their capacity. This reinforces the importance of clear communication and respect for the patient and their position, even when you disagree with it on clinical grounds.